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-- Common Questions About Bleeding Disorders
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  Do I Have a Bleeding Disorder?
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  Can Women and Girls Have Hemophilia?
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   NHF > Project Red Flag > Your Stories
 

Your Stories 

Maria Rubin

Maria Rubin–whose son Willie has severe factor VIII deficiency– was one of the only consumers in a sea of healthcare providers attending a 1992 meeting on inhibitors. A German doctor explained the results of several European studies of immune tolerance induction (ITI), a new treatment that rid many hemophilia patients of inhibitors. Four-year-old Willie had developed inhibitors to his factor VIII regimen, and Maria wanted to learn about treatment alternatives. ITI sounded promising. Maria contacted her son’s hematologist as soon as she got home from the meeting. Several months later, after Willie’s doctor had consulted with experts on ITI and worked with Maria’s insurance company to cover the procedure, Willie Rubin received ITI–one year before anyone else at the HTC in Tampa, Florida. No more inhibitors.

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Maria’s brother had severe hemophilia A. In their small town in northern Peru, cryoprecipitate was the only treatment available to him, a treatment he began at age 10. By that time his joints had already sustained serious damage. Willie’s inhibitors brought back memories of her brother as a child, and she educated herself to ensure her son would receive better care than her brother had.

"I attend every meeting I can," says Maria. "There’s always something new to learn." When a friend’s hemophilic son was having knee troubles, Maria attended sessions about physical therapy and told her friend what she had learned, encouraging her to take her son to a physical therapist. At NHF’s 1997 Annual Meeting, in New Orleans, Maria attended the provider session on gene therapy. Willie’s hematologist was also in New Orleans. After attending the provider sessions on women with bleeding disorders, she recommended that Maria be tested for the level of factor in her blood.

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Is Maria a symptomatic carrier? The answer seems to depend on whom you ask. She doesn’t experience bleeding episodes, but she’s always had heavy periods. She’s reluctant to say she "bruises easily," because, as she says, "What’s normal?" Even after being diagnosed with anemia, she never felt exhausted–at least no more exhausted than she expected to be with two children, a husband, and a full-time job!

Maria’s daughter is a carrier, but at 14 years old, Rachelle is private and reluctant to talk to her mom about unusual bleeding. Maria tries to keep an eye out for signs of heavy or prolonged bleeding in Rachelle and hopes Rachelle will seek guidance from her doctor.

As Willie, now 11 years old and free of inhibitors, continues to gain independence, Maria continues learning about the latest developments in hemophilia research and talking to Willie’s hematologist about new types of treatment. She knows her brother would have been thrilled to see Willie running and playing like any other boy.

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Project Red Flag - For Women with Bleeding Disorders National Hemophilia Foundation